CVID and pains in joints and muscles.

[glowing]

Hi.
Every time I read about CVID, arthritis, especially painful hands and aching in back and limb muscles are mentioned. Because so many people who don't have CVID still have arthritis with all the same symptoms, it makes me wonder. My arthritis bagan many years before my CVID diagnoses and was put down to wear and tear, but could it have been caused by CVID? My immunologist said I was probably born with CVID even though the symptoms weren't as severe as in the last fifteen years, resulting in the diagnoses.

When people talk about severe fatigue. Does it mean they actually need sleep or is the fatigue felt in muscle weakness when doing anything even slightly energetic?

I didn't understand what it meant when the doctor said CVID can cause autoimmune conditions where the body attacks itself. Is that what arthritis is?

Would it be acceptable/true to say CVID has caused my arthritic deformaties or is it just assumed because so many CVID sufferers also have arthritis?

Glo

[s162216]

Hi Glo,

It is true to a certain extent that having CVID does appear to pre-dispose patients to auto-immune conditions such as arthritis (where there is unwanted inflammation in joints which may be the result of unwanted immune system activation) , Type 1 Diabetes, psoriasis etc which is somewhat ironic considering that that it makes the body more vulnerable to infection, yet also appears to increase the chances of the immune system attacking the bodies own tissues etc! CVID is a genetic condition so it is present from birth, but because its not exactly a single condition (its a collective term for an estimated around 40 PID type conditions which have similar clinical symptoms, but the causes cannot be differentiated between at the moment) the effects are very variable in patients with some being affected from birth, whilst others may not show any symptoms for years and then suddenly go downhill.

Its impossible to say whether CVID caused your arthritis as CVID itself doesn't cause the autoimmune conditions, but appears to pre-dispose patients to these conditions which may be the result of it indirectly modulating other body processes (as a result of genetics) which can result in them. Fatigue in the case of CVID is referring more about the feeling of tiredness, lethargy etc than muscle weakness (which is also technically fatigue, but as a natural result of doing physical work with muscles as they will tire - doing resistance training with weights etc allows muscles to work harder and for longer) and sleep can help resolve fatigue. Generally the reason for most fatigue is unknown though as its something which cannot be measured, and it may or may not be a result of something else e.g anaemia causes fatigue because of a lack of oxygen reaching body tissues, but the reason for fatigue commonly experienced by PID patients is mostly unknown.

Hope this helps,

Sam

[glowing]

Thank you very much Sam. You've been very helpful.

Glo x

[s162216]

Jan 30, 2014 13:15:40 GMT glowing said:

Thank you very much Sam. You've been very helpful.

Glo x

I would go back to your doctor though, and ask them to clarify what they've told you if you don't understand - its usually best to do that if you don't as it can be very helpful to both you and them later on.

Sam

[glowing]

I'm have an appointment in June to speak to him by tele-link so I'll ask him then. In the meantime I'll try and contact the Immuno nurse.
Thanks again Sam.
Glo

[john]

My own joint pain began when my immunodeficiency became critical and I needed IGg replacement.
For several years it was so bad I needed painkillers and support bandages to ease the pain.
It carried on for several years coming and going at random, and it was always the thing that other patients wanted to talk about, because it seemed that everyone I spoke to had it.
Now it's not so bad, and has mainly gone, except sometimes my hands really hurt.
There is no swelling or joint deformation, just a steady ache.
So maybe there is light at the end of the tunnel, we just need to get on top of our therapy!!
Fatigue is another thing though, that never seems to get any better.
Like Sam says, I just have to pace myself and get the rest my body is telling me to take, and then I can sort of manage, though it is a real drawback when Sue is wanting to go for a long walk or spend a day working on the allotment and I just don't have the energy to keep up with her ( but she is younger than me!)

[glowing]

I have deformities in my upper spine (slight curve) and suffer general neck and shoulder pain, also in my hands and wrists. I used to have cortisone injections in my lower spine but stopped because they didn't help. I've had a replacement left hip and the recent operation on my toes, which were all successful, apart from aching.
I had to go to the GP a couple of weeks ago as I had quite severe neck spasms affecting my arms, back and head and bad asthma flare-up. I didn't have an infection but he said he thinks I have a virus and prescribed seven days of antibiotics and steroids, which made no difference. I'm on a different antibiotic and another week of steroids. The pains are improving but my asthma is still quite bad. If I sit doing not much then I'm okay but if I move around or try to do anything quickly I'm very breathless. That's how I used to be all the time before I was diagnosed. This is the first really bad bout I've had since I began treatment. The reason I was referred in the first place was 'untreated asthma' as nothing they gave me controlled it.
Some good has come out of all this as everyone assumes that whatever I have now is due to CVID and they just accept it, plus my lovely husband can't do enough for me when I'm unwell. But like all of us, I'd still rather not have it at all.

[lilly71]

glowing: I don't know if you check back here ever, but let me tell you how much crap I went through to register on this site just to send you a message... Anyway, I wanted to tell you that my husband's very, very severe asthma was actually cured with Xolair. It was not meant to cure it, but it did. He did the injections for about two years and when he ran out once, he went several months without doing the injections. We began to realize that he did not need it anymore. That was about five years ago and he has not had any more asthma attacks (knock wood). He has an inhaler for dusty situations, but his asthma was SO severe for so long, and so we say it is relatively gone - gone! I hope this helps you.... If you need any further information, please let me know... Be well and peace!

p.s. I was directed to this site because I have CVID and was just wondering if my spinal injection was okay to get given the fact that I have CVID.... Sometimes steroids make things "grow" or make them worse...

[glowing]

Hi Lilly. Welcome to the forum. Thank you for your message. I am going to see the respiratory consultant, when I can get an appointment, so will mention your comments regarding your husband's asthma.

I'm sorry that you've had difficulty registering on this site and am interested to know what trouble you had to register in case your problem was something that our boss Sam needs to know about. We'd like to know about your CVID, when you were diagnosed and treatment etc. Most people have interesting and varied stories. I haven't had a look in the other departments yet, but if you haven't already told us then please pop back.

I had my spinal injections before I was diagnosed with CVID and none since, so I can't advise you about it now. But I know a man who can. Our boss Sam is the one to advise you or point you in the right direction.

Glo

[jackiedal]

I was diagnosed with cvid 1 1/2 years ago. I dealt with neck, back and shoulder problems for years. Before my diagnosis I developed severe knee pain, for no reason. I also had toe and finger pain. The pain in the toe, finger and knee improved with subq IgG. I am not as sick as before but still have much fatigue. The best thing I have done lately is an Aqua-ritis class in a heated (92 degrees F). I am able to exercise so much better in the heated water and do not rebound with pain later on. We need to have more accessibility to these classes and heated pools. It has helped me so much.